Back in October, the American Parkinson Disease Association (APDA) welcomed Dr. Holly Shill to host a webinar providing perspectives to help viewers map out a future living with PD. Holly Shill, MD is the director of the Muhammad Ali Parkinson Center and Movement Disorder Program at the Barrow Neurological Institute in Phoenix, Arizona.
The webinar is 45 minutes long, and can be viewed here.
The first half of the webinar was the speaker’s presentation, and the second half was a question and answer session. My notes summarizing can be found below.
Spotlight on Parkinson’s: Roadmap to the Future
October 21, 2020
Webinar hosted by the American Parkinson Disease Association
Speaker: Holly Shill, MD
Summary by Cassandra Irizarry, Stanford Parkinson’s Community Outreach
Some alarming statistics:
- PD is on the increase
- For a variety of reasons
- Outpaces Alzheimer’s
- PD results in loss of employment
- People with PD retire 4-7 years earlier; the average age of onset is 60
- Less than half of PD patient receive treatment by a neurologist
- Being treated by a primary care provider; patients have to be advocates for themselves
- PD mortality is higher than once thought
- About the same as having a heart attack
- Over half of
Palliative Care Principles: “living as well as you can for as long as you can”
- Focus on the person rather than the disease
- Relief of suffering
- Quality of life, not quantity
- Intensive management of complex symptoms
- Often uses a team approach
Time for palliative care:
- From the time of diagnosis
- Change in level of function
- After fall, illness, or cognitive disease
- Assistance with ADLs
- Psychological issues
- Care partner distress
PD and Covid
- Are people with PD at a higher risk?
- Probably not; PD does not affect immune or lung systems
- People with PD can be the age group at risk
- Social impact is most of what we’re seeing; suffering from an inability to socialize and exercise
What you should know at the time of diagnosis:
- Familiarize yourself with current research
- Learn if you’re a candidate for any studies
- Get educated; know what you’re dealing with
- Consider how PD can/will affect your hobbies/work
- When to start/change medication
- Understanding the trajectory of PD
- PD can be hard to predict, but there are commonalities:
- Motor symptoms:
- Bradykinesia (slow movement)
- Most remain stable for about 5 years and then progress
- Non-motor symptoms:
- PD can affect:
- Good sleep hygiene:
- Avoid caffeine and nicotine close to the bed
- Don’t use alcohol as a sleep aid
- Avoid evening fluids
- Avoid evening diuretics
- No long naps
- Exercise early in the day
- Sleep and wake at the same time each day
- Keep the room cool and dark
- Listen to white noise
- Avoid late-night scary movies
- Once awake, let light in
- No OTC meds unless discussed with a doctor
- Good sleep hygiene:
- Blood pressure
- Sense of smell
- Compulsive behaviors
Addressing work and hobbies:
- PD becomes part of your every day:
- May cause visible symptoms
- Change in voice
- Difficulty getting thought out
- Balance problems
- Trouble with hand-eye coordination
- Do what you can now, but have a plan B or C
When to start or adjust medication:
- The main goal is to reduce the symptoms (not signs) of PD with the least amount of side effects
- Consider starting/adjusting medication if you experience:
- An increase in physically disabling symptoms
- Socially disabling symptoms
- An increase in PD complications
- Almost all medications approved to treat PD target motor symptoms
When to consider additional caregiving:
- Falling frequently
- Significant hands-on care
- Needing help at night
- Cognitive issues
- Needing assistance with medications
- Can’t leave the patient alone
- In-home care
- Assisted living
- Group homes
- Traditional nursing homes
- State programs
- MAO inhibition (rasagiline/selegiline)
- Agonist vs. levodopa
- Agonists for young PD
- Levodopa for older PD
- Most people end up on both
- No difference after about 7-10 years of follow-up
- Add on therapy
- Motor fluctuations and dyskinesia
New PD medications:
- Safinamide (Xadago): new MAOI FDA-approved in March 2017
- Opicapone: COMT inhibitor FDA-approved July 2019
- Inbrija inhaler: FDA-approved December 2018
- Apomorphine: FDA-approved in 2004 and 2020
- Istradefylline (Nourianz): FDA-approved August 2019
– Medication for off-time and levodopa-induced dyskinesia:
- Gocovri (Amantadine ER): FDA-approved August 2017
- Osmolex: FDA-approved 2018
- Resistance training:
- Improves muscle strength
- Reduces instability
- Decreases falls
- Improves quality of life
- Aerobic exercise:
- Ex: walking on a treadmill or outside; cycling
- A combination of resistance and aerobic training is likely best
- Helps fatigue
Addressing Mood Symptoms:
- 40-50% of those with PD suffer depression and/or anxiety
- Peaks in early PD are more advances
- Independent predictor of quality of life
- Mood is treatable!
- Lots of options
- SSRI, SNRI, TCA
- Talk with your families not only about CPR and life support, but also:
- Where you want your care to be
- Who you want as caregivers
- Hospitalization and end of life care
- Are you “at peace?” If not, why not?
- Spirituality isn’t just religion:
- Purpose and meaning in life
- Connection to self and others
- Connection to nature
- Connection to a higher purpose
- Be kind to yourself:
- If you are a care partner, find joy in it
- If you are a patient who needs care, allow yourself to be cared for
- Practice mindfulness
- Acknowledge strong emotions
- Get support
Question and Answer:
What does a PD related death mean?
Pneumonia is probably the number 1 cause of death. People will call it a complication of PD if you call and don’t recover.
Can you comment on the neuroprotective effects of exercise?
Exercise has been shown in animals to be neuroprotective- we don’t know for sure if this is the same case in humans, but we think that it is. We do for sure know that it decreases disability and that that may slow the progression of the disease.
What are some tools that can be used to accurately assess cognition?
If you want a really detailed assessment, you would see what’s called a neuropsychologist. Testing may take 3-4 hours to complete, but it can be really comprehensive and detailed.
Status of research on monoclonal antibodies?
Monoclonal antibodies are the type of therapy that directly targets alpha-synuclein protein. Right now, many potential treatments are in Phase II clinical trials. A new study will be starting next year- it’s promising so far, and we have seen no negative safety effects.
Address pain in PD and how it can be treated?
10% of PD have significant pain due to PD. Muscle stiffness and cramping are typically addressed through modifying the PD therapy itself. More commonly, pain is caused by the normal wear-and-tear we accumulate as we age, like arthritis.
How can we find a neurologist with extensive knowledge of PD medication and symptoms management?
APDA should have resources. Most neurologists have been trained in PD management. You can also see a movement disorder specialist.
How can you check if you’re eligible for enrollment in a clinical trial?
I would start by asking your neurologist. I also refer people to the website clinicaltrials.gov. You can put in PD as search criteria and the state that you live and it will populate trials happening in the city closest to you.
If you feel regularly fatigued, how much should you regularly exercise?
If you want to be tired after you exercise, but don’t want to feel wiped out. If you feel wiped out, you’re probably doing too much. I generally recommend moderate exercise 4 days a week.
If you have a lot of problems, can your neurologist handle non-motor symptoms?
As a neurologist, I am very comfortable handling all the non-motor issues. I’d like my patients not to have a specialist for every body part. I recommend talking with your neurologist and seeing what they’re comfortable with for a good start.